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Helping people to have a ‘good death’
- Author:
- TRUSTAM Rosemary
- Journal article citation:
- Community Living, 23(3), Spring 2010, pp.22-23.
- Publisher:
- Hexagon Publishing
The author describes her recent experience with her 89 year old mother, and how it caused her to reflect on some practices which have enabled what she calls ‘a good death’. The article outlines an end of life care strategy, which involves: being treated with dignity and respect; being without pain and other symptoms; being in familiar surroundings; and being in the company of close family and friends.
Staff perceptions of essential prerequisites underpinning end-of-life care for persons with intellectual disability and advanced dementia
- Authors:
- McCARRON Mary, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 7(2), June 2010, pp.143-152.
- Publisher:
- Wiley
The philosophy behind today’s intellectual disability (ID) service system encompasses building independence, promoting skills and empowerment. However it is possible that this approach may be less helpful when supporting person with ID aging and coping with increased disability and the inherent decline evident in dementia. To better address palliative care and end-of-life issues for persons with intellectual disability (ID) and dementia, the authors set out to understand the perspectives of agency staff in both the ID services and specialist palliative care fields in Ireland. Thirteen focus group interviews were conducted involving 50 participants drawn from six ID service providers and seven participants from one specialist palliative care service. Thematic analysis collapsed ideas into two core themes: building upon services' history and personal caring, offering quality and sensitive care; and supporting comfort and optimal death in people with ID and advanced dementia. Challenges were identified for service systems in the areas of; aging in place, person-centred care, and interservice collaboration. The authors recommend both more practice relationship-based and collaborative approaches to care and a stronger evidence-based research program on the timing and the efficacy of palliative care for persons with ID and dementia.
Supporting persons with Down syndrome and advanced dementia: challenges and care concerns
- Authors:
- McCARRON Mary, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 9(2), May 2010, pp.285-298.
- Publisher:
- Sage
There has been growing interest in addressing resource, training, and service redesign issues including an increase in collaboration in response to the increasing prevalence of dementia among persons with intellectual disability (specifically Down syndrome) – and recently this has included consideration of the specific issues in advanced dementia. This study aimed to understand staff challenges, issues and perceptions of critical issues in caring for persons with both intellectual disability and advanced dementia. Thirteen focus group interviews were held involving staff in six intellectual disability services and one specialist palliative care provider in Dublin, Ireland, where the staff identified three key themes: readiness to respond to end of life needs; the fear of swallowing difficulties; and environmental concerns and ageing in place. Results highlight four underlying issues that emerged in this study offer clues to solutions: differences in staff preparation associated with settings; lack of understanding and lack of collaboration with palliative care services; uncertainties about the ability to transfer existing palliative care models to persons with intellectual disability and dementia; and the need to develop training on end stage dementia and related care approaches.
A fast track path improves access to palliative care for people with learning disabilities
- Author:
- WHITINGTON Jane
- Journal article citation:
- Nursing Times, 18.5.10, 2010, pp.13-14.
- Publisher:
- Nursing Times
The development and implementation of a fast track referral pathway for people with learning disabilities at St Francis Hospice in Essex is described. The pathway aims to improve access to health services for people with learning disabilities, their families and carers when facing a life limiting illness. It is hoped that others will replicate this method of collaborative working to improve access to palliative care services for this group.
Supporting Derek: a practice development guide to support staff working with people who have a learning difficulty and dementia
- Authors:
- WATCHMAN Karen, KERR Diana, WILKINSON Heather
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2010
- Pagination:
- 58p., DVD
- Place of publication:
- York
This training pack is aimed at staff and volunteers supporting people with learning difficulties who have or may develop dementia. It is designed to be used by a trainer or lead person for training or to promote discussion. Each section is structured around 10 topics. Sections cover: learning difficulty and dementia; understanding behaviour; developing supportive environments; responding to pain; effective communication; meaningful activities; when a friend or relative has dementia; nutrition and hydration; night-time care; and palliative care. Each section includes suggested activities, information sheets and tools, and further reading. A DVD, which includes a short drama acted out by people with a learning difficulty and discussion on the drama, accompanies the training pack.
End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities
- Authors:
- D'HAENE I., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 54(12), December 2010, pp.1067-1077.
- Publisher:
- Wiley
This article aims to describe the presence, content and implementation strategies of written policies on end-of-life decisions in Flemish residential care facilities accommodating persons with intellectual disabilities, and to describe training, education and quality assessments of end-of-life care. A cross-sectional mail survey was conducted among general directors of all 140 residential care facilities accommodating persons with intellectual disabilities in Flanders, Belgium. The institutions were also asked to provide a copy of their end-of-life care policy documents for content analysis. Of the 140 institutions, 84 completed the questionnaire and 25 provided 45 policy documents. Presence of policies on specific end-of-life decisions with a possible life-shortening effect lay between 18% (palliative sedation) and 26% (withdrawing or withholding of life-prolonging treatment). The content analysis showed that the focus in the majority of these policy documents is on palliative care, while end-of-life decisions with a possible life-shortening effect are mentioned but rarely elaborated on. Few documents incorporate the distinctive features and needs of persons with intellectual disabilities regarding end-of-life care. Half of the institutions trained and educated their professional care providers in some aspects of end-of-life care while one-third assessed the satisfaction of residents and families on several of these aspects. The article concludes that the presence of end-of-life care policies is low in Flemish residential care facilities and their content is not very specific for persons with intellectual disabilities.
Person centred thinking and end of life care
- Author:
- HELEN SANDERSON ASSOCIATES
- Publisher:
- Helen Sanderson Associates
- Publication year:
- 2010
- Pagination:
- 2p.
- Place of publication:
- Stockport
This case study describes the use of person centred approaches by a Wiltshire-based nursing team to personalise the end of life care for people with learning disabilities. Two members of staff describe their use of a tool that considered separately what people liked and wanted so they can be happy and content (for example, keeping up the activities they enjoy) and what they needed to ensure health and safety (for example, appropriate care).
Placement, relocation and end of life issues in aging adults with and without Down's syndrome: a retrospective study
- Authors:
- PATTI P., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 54(6), June 2010, pp.538-546.
- Publisher:
- Wiley
It is suggested that aging adults with Down's syndrome (DS) experience more relocations and other life events than adults with intellectual disabilities aged 50 and older without DS. Age-related functional decline and the higher incidence of dementia have been implicated as factors leading to relocation and nursing home placement. This retrospective study of adults with intellectual disabilities born prior to 1946 living in New York State was conducted to estimate the number of relocations experienced over a 5- and 10-year period. The cohort consisted of 140 individuals (61 with DS between ages 50–71 years, and 79 without DS between ages 57–89 years) who had been referred to a diagnostic and research clinic. The number of relocations over the period was significantly greater in the DS group. Placement in a nursing home for end of life care was also significantly higher in the DS group whereas the 90% of the non-DS group remained in a group home setting. Death came significantly earlier in the DS group; mean age at death 61.4 years compared with 73.2 years in the non-DS group. The authors conclude that aging adults with DS encounter more relocations, and are more likely to spend their final placement for end of life care in a nursing home.
Exploring the lived experiences of people with learning disabilities who are dying of cancer
- Authors:
- TUFFREY-WIJNE Irene, et al
- Journal article citation:
- Nursing Times, 18.5.10, 2010, pp.15-18.
- Publisher:
- Nursing Times
Participant observation was used with 13 people with learning disabilities with a cancer diagnosis, 10 of who terminally ill. The study aimed to explore their experiences. The main themes were: dependent lives; deprived lives; truth telling and understanding; the importance of families; inexperienced carers and unprepared services; and resilience. It is concluded that in order to understand the experiences of people with learning disabilities who are dying with cancer it is important to understand their previous life experiences and key relationships. Treating patients with respect, dignity and openness can make a positive difference to their care.
Living with learning disabilities, dying with cancer: thirteen personal stories
- Author:
- TUFFREY-WIJNE Irene
- Publisher:
- Jessica Kingsley
- Publication year:
- 2010
- Pagination:
- 272p., bibliog.
- Place of publication:
- London
This book describes the lives and illness of thirteen people with learning disabilities who had cancer. As accessible to family members as to professionals, more information on the research methods used by the author on ‘the Veronica project’ is appended. The author visited all the participants at home, day centres, hospitals, hospices, nursing homes, and accompanied them to GPs and outpatient departments for three years to see what it is like for individuals with learning disabilities to live with deteriorating health and recorded what happened to ten of them just before their deaths. The experiences of families, paid carers and the health and social care services that supported them are detailed. The author looks at each case in terms of diagnosis and how cancer and its implications were explained, how much was understood and how individuals coped with the treatment. The suffering experienced by people with learning disabilities at the end of their lives is highlighted, but also their resilience and strength is applauded by this author. The final chapter builds on the optimism of the latter and several recommendations for how people with learning disabilities can be supported at the close of their lives are raised.